“I was very lucky to be born when I was,” says Gretchen Hall, talking about her congenital heart disease.

Born a “blue baby” in 1960, Gretchen’s parents were told that her chances of living very long were low. Her parents prayed she would be with them for a year.

Gretchen was born with cyanotic heart disease, the combined result of a number of different cardiac defects that ultimately cause low-blood oxygen level. (When babies aren’t getting enough oxygen, their skin appears blue, which is why they are called “blue babies”). In the 1960s, only a few hospitals in the U.S. were doing heart surgery on children born with congenital heart disease.

Shocked and afraid, her parents didn’t know where to turn. Joel and Ruth Hensel lived in rural Michigan, far from any medical center that could perform the complex surgery that might save Gretchen’s life.

After consulting with doctors near and far, they followed the recommendation of their family general practitioner who told them to go to Dr. Michael DeBakey, a surgeon experimenting with a number of cardiac procedures, in Houston, Texas. In the summer of 1964, Joel and Ruth left their two other young children at home and packed Gretchen, then 3, in the car for the long drive to Houston.

Congenital heart disease in childhood and beyond

DeBakey performed a a Blalock shunt, which redirects blood flow so more blood reaches the lungs. The surgery was a success. Although Gretchen had to restrict her physical activity somewhat, she had no cardiac complications during childhood.

Small adjustments

As a child, Gretchen and her friends made small adaptations to accommodate her condition. They used designated runners to run for Gretchen when playing kickball, she served as the caller when playing games like Red Rover, and Gretchen twirled the rope for jump rope instead of jumping.

Her parents always allowed her to do whatever she felt she could do, and Gretchen set her own limits based on her physical tolerance. She had a very normal, happy, healthy childhood with her five siblings.

At DeBakey’s request, Gretchen returned to Houston while in high school for a follow-up catheterization. Everything seemed to be functioning as well as it could; DeBakey didn’t recommend additional treatment. However, while in college at Michigan State University, Gretchen began to experience episodes of passing out and more extreme shortness of breath. She had outgrown her original shunt.

At age 20, Gretchen realized she needed to take charge of her own cardiac care. “That was an important time for me,” she remembers.

In spite of her parents’ strong wish for her to return to DeBakey, Gretchen went by herself to the Mayo Clinic in Rochester, Minnesota and the University of Michigan’s Mott Children’s Hospital in Ann Arbor, Michigan, to be assessed. She met numerous doctors at both institutions, and they all urged immediate surgical intervention. However, no one could to speak to the odds of her health improvement after surgery, given the unusual combination of factors in her condition.

Gretchen and Phil

Based on geographic practicality and a strong desire to finish college in four years, Gretchen decided to stay in Michigan and have surgery to place a second shunt on the other side of her heart at Mott Children’s Hospital. At that point, for the first time in her life, she was followed routinely by a cardiologist — Dr. Amnon Rosenthal.

She recovered during the summer of 1981 and returned to Michigan State University, where she completed her bachelor’s degree in four years. After graduating, she relocated to Massachusetts where Rosenthal referred to her to Dr. Michael Freed, a leader in the field of pediatric and congenital cardiology who is now a senior associate in the Boston Children’s Heart Center.

The first meeting with Freed paved the way for a great doctor-patient relationship. “When I came to Boston Children’s Hospital, I felt empowered and in a better position to manage my heart disease on my own,” says Gretchen.

A living legend

Boston Children’s Hospital was one of the places Gretchen’s parents considered for her first surgery. The handwritten correspondence between Gretchen’s father and Dr. Alexander Nadas, chief of cardiology at Boston Children’s in the early 1960’s, remain in her file today. Dr. Freed showed them to Gretchen and shared the story of Dr. Nadas becoming familiar with her case when she was a child.

Looking ahead

In 1987, Gretchen began experiencing problems with her heart rhythm — it was beating too fast and irregularly, a condition called atrial fibrillation. She was referred to Dr. Edward Walsh, chief of cardiac electrophysiology, who tried every possible option to correct Gretchen’s rhythm. Ultimately, Gretchen required a cardioversion, which restores the heart’s normal rhythm via a dose of electrical stimulation.

Since then, Gretchen has used a wide range of medicines to control and manage her irregular rhythms with some success, but still periodically experiences atrial fibrillation. She almost always needs a cardioversion to return to a normal rhythm.

“At this point, I’ve probably had 30 or 40 cardioversions,” says Gretchen. “What’s interesting about it for me is that there aren’t a lot of examples. Patients my age are in new territory that’s largely unexplored.”

Dr. Keri Shafer, in the Boston Adult Congenital Heart Program (BACH), manages Gretchen’s follow-up care, and this grown-up “blue baby” is living a rich life.

The importance of trusting your care team

Gretchen discovered along the way that doctors did not always agree on the best course of action. On several occasions, she found herself weighing very different recommendations, often from different specialists who viewed her medical needs from varying perspectives. While she always found these times perplexing, she determined it was good to always consider things from all angles.

One of the reasons she admires Dr. Freed is he helped her sort out the possibilities and supported every medical path she took, even if it was not what he recommended. She says it is always worth asking many questions if you feel unsettled in any way about medical information and advice.

Gretchen and her husband, Phil, will celebrate their 30th wedding anniversary this year. Their son Josh is a junior at Fordham University in Manhattan, where he is studying film and theater. In her professional life, Gretchen has always felt the need to give back to a world that has given her a fulfilling life. She coaches other professionals who serve vulnerable children and families.

To other adults and young people with congenital heart disease, Gretchen says, “You can have a very fulfilling and active life! I say, do not let your heart condition hold you back from doing anything you would like to explore.

“[Dr. Shafer] told me about a study that indicated adults with congenital heart disease are more optimistic than the general population,” she adds. “I tend to be very optimistic, in general!”